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Svetlana Toder Madi's Fundraiser:

Noelle's Superheroes- Run to cure BPAN

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Svetlana Toder Madi

THE STORY:

Please help us give the gift of hope to Elle and all children with her diagnosis by participating in the Ann Arbor 5k Super Run and donating to NBIA research.


Noelle is a true Superhero, she is a beautiful, five-year-old hug monster who befriends even the surliest of strangers. Despite her happy and loving disposition, she struggles with everyday tasks we take for granted... she is diagnosed with BPAN, an NBIA disorder.


Unfortunately, BPAN is predicted to steal her future.  BPAN was only discovered in 2012 and there is no cure. With only 100 documented cases worldwide, the disease is not high on research lists.  


The disease carries a devastating prognosis: childhood global developmental delays progress to a crippling, Parkinson’s-like movement disorder (dystonia) and cognitive decline during adolescence or early adulthood. Life expectancy is shortened, with final years that involve wheel chairs, feeding tubes and around-the-clock care.    


All the money that will be raised will go directly to the NBIA Disorders Association. It is the only patient organization in the United States dedicated to finding a cure for NBIA disorders. It is a non-profit, 501(c) (3) organization, founded in 1996 as the nation’s leader and expert in advancing awareness and research into these rare disorders.    

DONATE

To This Fundraiser

$1,430

MONEY RAISED
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  • Judy Abraham

    $120

  • Anonymous

    $10

  • Dr scott cohen & Siema naam

    $100

  • Mike and Mary Finnegan

    $100

  • Brian and Kaci Kegler

    $100

  • Mika Marcovitz

    $50

  • Sam and Tanya Hoyek

    $100

  • Alexis Piper

    $25

  • Nurit Haspel

    $25

  • Garry Baars

    $50

  • Julene Baars

    $50

  • Anonymous

    $50

  • Anonymous

    $50

  • Anonymous

    $50

  • Anonymous

    $50

  • Grandpa Dan and Grandma Vicki

    $250

  • Toni Dwan

    $100

  • Uncle Tyler

    $100

  • Anonymous

    $50

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29% Raised of $5,000 Goal

Fundraise for this Campaign

The Team: $1,430 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Svetlana Toder Madi

Amount Raised

$1,130

 

23% Raised of $5,000 Goal

Fundraiser Title

Tarek Madi

Amount Raised

$50

Fundraiser Title

Samer Madi

Amount Raised

$50

Fundraiser Title

Christine Said

Amount Raised

$50

Fundraiser Title

Nicole Abrahim

Amount Raised

$50

Fundraiser Title

Ryan Franso

Amount Raised

$50

Fundraiser Title

Nurit Haspel

Amount Raised

$50

Donor Comments

Anonymous

ANONYMOUS

DONATION: $50

Hugs to Elle 1 year ago

Uncle Tyler

Uncle Tyler

DONATION: $100

To the best Wonder Woman! Love you, Elle 1 year ago

Toni Dwan

Toni Dwan

DONATION: $100

1 year ago

Grandpa Dan and Grandma Vicki

Grandpa Dan and Grandma Vicki

DONATION: $250

Noelle, sorry we can't be with you. Thinking of you. 1 year ago

Anonymous

ANONYMOUS

DONATION: $50

1 year ago

Anonymous

ANONYMOUS

DONATION: $50

1 year ago

Anonymous

ANONYMOUS

DONATION: $50

1 year ago

Anonymous

ANONYMOUS

DONATION: $50

1 year ago

Julene Baars

Julene Baars

DONATION: $50

A tribute to our own little Wonderwoman, Elle! 1 year ago

Garry Baars

Garry Baars

DONATION: $50

1 year ago